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It would be nice if the doctor treated your child more like a human being instead of a piece of meat.

My daughter’s heart condition was a disaster; she suffered brain damage after an operation 15 years ago. No one could face us, no one talked to us, and when I say no one I mean doctors, nurses, health visitors, GP, community nurse. Mind you, the general practitioner did not get any letters for over three months. All I can remember is that he retired in the meantime and I was alone in the surgery with the new doctor and the receptionist. We didn’t even sit down. He read out to me a long list of everything she couldn’t do. I stood there and tried not to cry, holding it in until I got out of there as fast as I could, shut the door, and cried my eyes out.

I used to visit her in hospital, which meant taking two buses from my parents’ house as my marriage had totally broken down. I used to cry all the way. God knows what people thought.

As for my friends—I had three bridesmaids at my wedding and within a week of them knowing about my daughter I never saw or heard from them for 10 years. I have no contact with them now.

My own family told me to get rid of her. As an only child I had no sibling support. Luckily I made friends with two or three other people who had suffered a tragedy themselves. Men treated me especially badly, taking advantage when I was vulnerable—for example, my ex-boyfriend’s brother had sex with me which I would not have consented to if I had been in my right mind. I prefer to be alone now.

How do I feel? Well I was told her brain would kill her before her heart so I expected her to die before she was 5. Ten years further on I feel I cannot communicate with people any more and can’t move on because the worst is yet to come. I find the isolation the worst thing. It worries me also that it might be genetic.

What’s it like to be a mum?

I don’t look like a mum. I don’t feel like a mum. I watch the parents in twos and threes talking about school, I just want to fall to my knees. They’re a different breed Just worlds apart. Who would know we all pass through the park (I know what it’s like to be a mum).

I feel like a child With a plastic doll Playing house That’s all. When I grow up it will be alright. I must look a terrible sight. I watch the real children push and shove At their age what friends they must have. (I know what it’s like to be a mum).

I cannot get out of my head that the way other people might see me is to think I’m riddled with AIDS because I look so ill with the stress of it all. They must think I lost the plot.

My parents say I’m depressed, angry, and stressed. I feel excluded because I am poor. No one ever approaches me; my friend’s boyfriend said I was intimidating until he got to know me.

Government bodies, like the Department of Social Security treated me as though I was a criminal. I’m unemployed and don’t want to live on benefits. I had a husband, job, house, mortgage before this; now I’m in temporary accommodation and because it is designed for the disabled, should April drop dead my son and I will be homeless.

I live on pain killers as I don’t drink or smoke and never have. The whole experience has been devastating.

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